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MitoAction Blog

by Cristy Balcells

Mitochondrial disorders are characterized by complex presentation of multiple symptoms. Due to a variety of factors, including heterogenity of the disease, erratic symptom presentation and general lack of awareness about the condition, families with mitochondrial disease are more often faced with accusations of medical child abuse than other conditions. Living with mitochondrial disease and serving as one's own advocate impacts the entire family on a daily basis.

Dec 12, 2014 Comments: 0
by Christine Cox
Last spring, MitoAction announced the formation of the Advocacy Task Force to address recurrent and widespread allegations of Munchausen Syndrome, Munchausen Syndrome by Proxy, and Medical Child Abuse throughout the mitochondrial disease community.  The purpose of the Advocacy Task Force is to provide a well-reasoned community response to this issue from members of our disease community. 
Dec 10, 2014 Comments: 0
by Christine Cox

MitoAction has joined Patients and Physicians for Rx Access, a coalition addressing the issue of insurance cuts to compounded medication coverage.

Nov 24, 2014 Comments: 0
by Cristy Balcells
What is the mitochondrial disorder PDCD?PDCD is an abbreviation for pyruvate dehydrogenase complex deficiency, a genetic mitochondrial disorder in children which is frequently associated with lactic acidosis and neurological/neuromuscular symptoms. Join us Friday November 7th, 2014 with Dr. Peter Stacpoole from the University of Florida to learn about testing, diagnosis and treatment of PDCD.

(From Dr. Stacpoole's Benefunder Research page)

Oct 20, 2014 Comments: 0
by Cristy Balcells
Join us this month with Dr. Andrew Nierenberg from Massachusetts General Hospital to learn more about Psychiatric Disorders in Mitochondrial Diseases and Mitochondrial Dysregulation in Psychiatric Disorders.
Sep 26, 2014 Comments: 0
by GingerD

KINGSPORT, TN -- The Castle family’s goals are simple: raise awareness about mitochondrial disease, move forward, and live.

They count their blessings and thank God for all that they have, especially Cooper. “Cooper is here because of the hand of the Lord,” Chris Castle said about his 6-year-old son.

Cooper coded when he was 12 hours old, starting this Fall Branch, TN, family’s mitochondrial disease odyssey. 

Sep 11, 2014 Comments: 0
by GingerD

Aug 25, 2014 Comments: 0
by GingerD

BALTIMORE, MD —Charlie Bainbridge is a real daredevil. The Catonsville, MD, boy who is battling mitochondrial disease is the inspiration behind “Charlie B's Daredevils,” a team of 22 walkers who will return for the fifth consecutive year to walk in MitoAction’s Energy Walk and 5K in South Boston, MA, alongside other families and patients affected by mitochondrial disease.

Aug 24, 2014 Comments: 0
by GingerD

Stephanie Deady is a little apprehensive about attending her first MitoAction Energy Walk & 5K. It’s been a whirlwind year since her son, Logan, was diagnosed with mitochondrial disease and she still hasn’t processed it all.

“Being around so many people with similar issues makes it so real,” said the North Providence, RI, mom.

“I wake up and I just do it. I just move forward, because I have to. When I stop and think about it, the tears will come. I want to meet other people, but I don’t want to cry.”

Aug 20, 2014 Comments: 0
by GingerD

DERRY, NH –Amy and Jason Marquis’ daughter was given a death sentence. Riley, also known as Little Miss Roo, has Leigh’s Disease, one of the most devastating forms of mitochondrial disease.

Aug 11, 2014 Comments: 0

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